Carers Caring for Themselves

Why might it be of interest?

We all know that we should be looking after ourselves – after all if we get ill or find ourselves unable to care for any reason then the whole show can come crashing down.  But how many of us actually prioritise our own care, truly?

There are many ways we can look after ourselves but one area I think we probably all struggle with is leaving our young person behind while we go away on holiday.

This is an account from a parent who did prioritise her own care and that of her family.  It’s quite dramatic – a long planned family holiday had to be cancelled – but mum went ahead with a different holiday for the family anyway.  All the arrangements for the care of the disabled young person had been made so she thought why not have a holiday even if not the planned holiday?

I have permission to use her words which I wanted to do as I think the voice of a parent is a powerful thing.

I’m going to add my own experience of leaving my daughter behind but I thought this experience was worth sharing and I hope it helps you to a new perspective.

Parent experience

The background:  the family had planned a longed for Safari to Tanzania – only to find as the holiday date approached that the situation in the country was very unsettled and it wasn’t really safe to travel there.  Added to that the FCDO was issuing an ‘essential travel only’ notice, although by the time the family had cancelled this trip the FCDO had lifted the restriction.

We had a conversation and we decided we just couldn’t leave George behind and enter a country where the unrest was so recent and risk something reigniting and us getting stuck there. It’s a whole different ball game when you leave a loved one behind isn’t it!

 So, we have made peace with postponing the holiday by one year. We will go in November 2026. A close friend of mine asked me where we would be going instead because we shouldn’t waste all that support I had organised for George. But isn’t it weird that my first reaction was that I should cancel it all. I think I felt that if the holiday wasn’t major, I couldn’t possibly leave George behind.

 But I had a little think and as a family we discussed it and we decided to book a last-minute holiday so that we can really relax, and have a very different experience than that which we have when we go on holiday with our gorgeous boy. So, I booked Malta next week! The support system we had put in place for George doesn’t care what our destination is and the fact that we need a rest is more valid than ever. So, we are going on holiday! And I am even starting to get excited after the great disappointment that followed the postponement of Tanzania.

 You might like to read George’s blog – I am no poster boy:  https://www.facebook.com/GeorgePosterBoy/.

My own experience of leaving Sophie behind!

With Sophie now in supported living going on holiday without her isn’t much of a deal but we did take breaks without her while she still lived at home.  We have a family holiday once a year – we go to the same place and do the same things every year – which works for us and more specifically for Sophie.  She doesn’t like new and different – your young person may be different!

But going on holiday without her – that is a different ball game which requires much thought and planning – but it isn’t wrong.

What have we done over the years?

• We have taken a family break when Sophie has been away with one of her holiday clubs
• We have left Sophie at home with a carer while we went away – for short weekend breaks and a longer week long break
• We have gone to family weddings without her (she probably wouldn’t have left the car and if she had she’d have hated it all)
• We have holidayed in the UK and abroad – mostly Europe but we went to New Zealand for 3 weeks a couple of years ago

To be fair the New Zealand trip was after she went into supported living so we didn’t really need to do much on the care side of things for that trip but it was much longer than we’d ever left her before so that was a new experience for us.

The key to all of this is having the right care and having confidence that she was safe and happy.  Actually, the ‘happy’ bit is, if not exactly optional, not really the main point.  We’d like her to be happy while we’re away from her but if that’s not entirely achievable then I think well cared for and safe is good enough.

Obviously, there’s a cost and I am very aware that this is a major barrier for many.  It may be easier when our young person turns 18 and receives their care package from adult social care as the package in most cases more generous than a package from children’s services – and may also be the first time you have every had financial support for social care.

But I wonder if the cost is the real barrier here?  Or is it our own feelings around going away, enjoying ourselves – perhaps with other family and friends – and not including our disabled young person?

I guess that’s the key thing here – it is OK to do things without your disabled young person including going away on holiday.  Now, it’s not easy and we don’t all have the resources we need to achieve a holiday without our young person – either regularly or at all for that matter.  But if you do have the resources you can and should use them to support yourself and your family in whatever way works for you, including going on holiday (I’m starting to sound like a stuck record!).

Financial resources

Money matters – there’s no getting away from this in this situation.  The cost of the holiday has to be met as does the cost of care – which is probably the greater part of the cost.  The financial resources you may have include:

• Social care package
• PIP
• Universal Credit

Social care package:  if your young person is eligible for a social care package you can discuss your needs as well – either at their assessment and/or as part of a carers assessment.  Carers assessments rarely result in any actual money being given to you but they may allow some flexibility in the way the young person’s care package is used.  A social care package could include overnight care for your young person at a local respite facility or it could mean additional care hours in the package.  There’s nearly always a bit of flexibility in how you use the hours allocated as long as they meet the identified needs.

PIP:  when our young people are under 18 it’s pretty common for their PIP (or DLA) to just go into a family bank account but as they become young adults their benefits should be separated from family income (not urgent so don’t panic that you need to do this NOW but something to consider in the longer term).

Universal Credit:  if your young person is in receipt of UC it may be that most of it does, indeed, go towards meeting their everyday needs and expenses – but equally it might not all be needed in that way.  In that case you could save some of it up to help with the costs of a break.

Your young person’s benefits – PIP and/or UC – shouldn’t be used to pay for your holiday costs but they can be used to pay for, or contribute towards, their care costs while you are away.   And, of course, when they are going on holiday with you their benefits can be used to contribute towards their part of the holiday costs.  If the holiday is purely for your young person then I don’t think it’s unreasonable for them to meet the cost of the entire holiday – after all they couldn’t go without you or other carers.  When Sophie goes away with one of her housemates and 2 or 3 of the care team it is Soph and her housemate who are paying for the cost of the holiday cottage and this would be no different.  Her care is already covered by her care package so that’s not additional in her case but I have taken a carer away on holiday with me before and used Sophie’s resources to pay for the carer.

Well done if you’ve got this far – and I hope any feelings of guilt or similar that you may have had about holidaying without your disabled young person have been allayed.

If you want to share your experiences with me to share in this document I would be happy to add them in – I think this really is an area that parent experience can help other parents.